Team ILC Warriors
Comments
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Lily55...am very close to your diagnose....i understand your concerns and feeling like you're not 'living life'....i sometimes feel the same. we have to go on tho...don't you think? from vermont - where are you from?
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Lily, which is why femara is such a good drug for us. It starves the buggers of fuel. I have come to terms with the idea that I am very likely to die from BC ... eventually. I intend to delay that day as much as possible and I equally intend to enjoy my time, however long it may be, as much as possible.
It made me laugh yesterday. Dh and I were having dinner and laughing about some silly news story about a woman who crashed her car while shaving her pubic hair (she was shaving and driving at the same time
) Then he got serious and talked about the banking crisis in Cyprus and what it might mean for us. I told him that since I could do nothing at all to save the situation, I saw no reason to worry about it. Then we went back to laughing about pubic hair lady. Before cancer, I would probably have spent a good half hour stressing about the imminent collapse of the economy.0 -
I am english but live in spain patti, and i am frustrated with myself as want to feel joy etc ....and i want QOL instead i feel old way before my time thanks to rads and letrozole
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Kim, you've been in my thoughts and prayers all week! I'll be thinking of you again today and sending calming thoughts! xxxxxx
After day 4, my breast is pink, swollen, tender to touch, and feels heavy. I've also developed a pain with breathing and certain movements in my upper rib cage which extends around my mid back. Hoping I'm not developing pleurisy, which I had years ago when I was 21. Still remember the pain. Met with my RO yesterday but didn't mention this to her because I thought it was indigestion. ???? I guess I'll see how my day progresses. Advil seemed to take the edge off a bit so it makes me question my theory and also doubt it could be indigestion. Sigh....
I hope everyone has a great day today! Much love and hugs to you all!
~ Amy 😊0 -
Momine, I love the story about pubic hair lady! Hilarious! I believe that finding something to laugh about, a good gut-busting, tears rolling down your face laugh, is essential in keeping my spirits up. Whether it be the stupid cartoons circulating on Face Book or stories such as these! Thanks for sharing. 😃
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Kim, we will all be thinking of you today hoping for an easy procedure and good results. Remember to take it easy for a few days after to avoid the headache. You don't want that!
I agree about the daily funny. Yesterday I was talking to my daughter and trying to explain the TE's. We were in hysterics laughing over the visual of two very stale ciabatta rolls implanted on my bony chest. With square edges poking out past my armpit.
Dark humor? Maybe. But the laughter did us both good. :-)
I am not to the point where a day goes by that I do not think of cancer, and I am pretty sure I will die of it in one form or another......but while I acknowledge the thoughts, I try to spend as little time as possible there. Some days that takes more effort than others. But I generally manage to get beyond it and do something that gives me joy.
It may not make it better, but I am happier for it.0 -
Good morning amigas!
A year ago yesterday I finished my final tx of taxol, and today I go for my 3 months oncology appt. I am going to ask her about femara vs. tamoxifen ( which I'm on now), and a bunch of other things, like is it time for me to get scans again (MRI/PET, etc.)? All she does is palpate my boobs which I can do and do every month, she feels my neck for lumps, and checks my CBC counts. I mean really... are we just waiting for the other shoe to drop loudly enough so I hear it? Why aren't we being proactive? Those are the questions I have roiling around in my mind right now...a little wound up from nerves I guess.
Lemon 68 I hope your results are good and that you suffer no ill-effect from the procedure.
Earlier this week someone on this thread talked about not owning our cancer; that it was bad for us to do. I'm not sure about that but most of the time I don't think of it as mine, I think of it as something that happened to me. A friend of mine who goes to bikram with me is a St IV ovarian cancer survivor...2x...if you can believe that. She and I agreed that there is a definite break in our lives -- before cancer and after cancer-and it's a profound break. We also found that in a way cancer adjusted our lives so that we, as others of you have noted, focus on mostly basics of life--contentment, some joy, and love. That in itself is simply living, and everyone struggles with having more of that in our lives than the other stuff.
We felt like we knew how to have the good stuff now more than others who haven't been through our experience have. I'm not looking back at this one year anniversary like, "wow, it's been a YEAR", or anything like that. I mostly wake up every day and say to myself and the universe: Hey--I'M still HERE...!"" That's what's remarkable to me.
Finally, I don't think of what will kill me in the end (too often). I somehow don't like to think it will be cancer, so I imagine myself dying peacefully in my bed of something else, a ripe old lady, with a smile on my face. I do know it will be something, but okay--I'm trying to have a good life right now and so far it's working mostly except for those PTSD moments.
Today I'm going out to run in the Red Rocks of Sedona before I go to my appt. And I think I'll probably shout to the universe in the middle of all that wilderness and beauty: HEY!!! I"M STILL HERE!!!
Love to you all, welcome to those who've joined us, and namaste.
Claire in AZ
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Amy et al, I agree, laughing is so important.
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Claire, that sounds like an amazing place to run and its nice to know that Im not the only one that screams to the universe lol!. The problem I have if I go for a run before an appointment.. I feel so good after my run and then Im like its great everything is great.. enjoy your run!
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lily - spain sounds like a wonderful place to be. After rads, chemo, surgery I was so emotional....smallest things would make me cry - think I would cry at least 3x's a week...they decided to try me on lexapro....can't remember the last time I shed a tear. I was worried that it would just make me 'float' - you know - walk around in a daze - but it has worked out pretty well for me. I will say the last post from canadagirl made me nuts...but whatever. Guess i'm not floating. Best wishes to you.
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momine...i agree with the laughter. I've turned into a kind of news geek...I don't think it's a good thing. Days on end with no good news. So I'm trying not to watch! I need to take up walking...
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Okay, amigas, I'll admit it right now I'm feeling REALLY nervous about this appt. It's one thing to tell yourself it will be okay and another to know it's okay. I guess the positive is that I usually have been feeling nervous days before each appt, not hours before, but still. I'm nervous.
Claire
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claire - had my 2 year checkup last week....know how you feel. Before you know the day will be over! Good Luck
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Hi Ladies! I would love to hear from someone who has been a survivior as long as me:) I've been a warrior since 2006. Thanks much!
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Claire, progress not perfection. Small, sometimes tiny, steps add up to get you where you want to go. :-)
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Claire, I love the visual of you out there running and screaming Im still here! I love it. Let us know how the appt goes for you, we are with you. You have ever right to be anxious.
IlliniosNancy- I would love to hear more from you, what kind of treatment did you do? And congrats you are a survivor, welcome to the board.
Amy- I think of you every morning. I am getting pinker by the day, so glad its the weekend. Today I got a bouquet of daffodils for finishing my 1st week! That was so nice. I am also feeling so pain or I cant really describe it in my upper back on that side. I am sure one of the rads veterans can tell you if what you have is normal.
Thanks for all the well wishes. I had the lumbar puncture, the shots to numb were not pleasant but compared to what I have been though no big deal. Laying on my stomache with a burnt boob was the worst part. She said results today but I called DR office and he is out till Tuesday.. they are sending him a message so I am hoping. I saw the fluid and it looked like water, not sure if that means anything or not.
I dont understand why some of you feel you will eventually die of BC? I found it hard to read that, is it because of positive nodes? Am I naive to think that the chemo wouldnt have done its job? I remind myself alot that my cancer is in some petri dish somewhere, not in my body any longer. And the ITC's are also no longer there. It helps me to think of it this way but I wont for a second try to act like I understand the fear of positive nodes.
Kim
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Not sure if you mean me when you refer to canadagirl .. and if so not sure what I said that drove you nuts..
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There is someone on here called Canadagirl Rdrunner................not on this thread.....
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Thanks Lily, for letting me know that I was worried I offended someone. I saw you live in Spain, my sister lives in Lanzerotte. Where in Spain do you live?
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Kim,
I tend to think I will die of cancer, not because of the BC, but because I also have non-Hodgkin's lymphoma. My variety is slow growing but there is no real treatment beyond treating symptoms. I do occasionally feel that the deck is stacked against me.
Although I also recognize the very possibility that I could get side swiped by a car while riding my bike. ;-)
In the end, it doesn't really matter how life ends, but how it is lived.....right?
Today I ran, took a strength training class and baked Russian tea biscuits. All things that made me happy. :-)
Gail0 -
Hi Ladies,
For what it is worth...
I asked Mom's new MO yest about a low fat diet and increased exercise for BC- and he said it doesn't do anything for BC so much as that it is just a healthy lifestyle... I was like "I thought you promoted low fat diets with breast cancer" and he said, no for heart disease! I was like well of course, and of course it is a healthy diet/exercise for any person.. but nothing about low fat diets and BC?? and he said NOOOOO.
My Mom was quite happy to hear this as she hasn't changed her diet or really exercised at all. So I asked if the MO could just maybe offer her SOME type of encouragement to exercise at least? (yes, my Mom is sitting right here) and this MO just was not real helpful, and I said what about ARM exercises? So finally he says of yah, gotta do arm exercises or you'll freeze up and you won't want that. That was about the extent of his exercise pep talk.
*how disappointing!!!!!!!!!!!
but my Mom LIKES him! well SURE she does LOL he doesn't care if she does low fat, gives up alcohol etc or NOT! sheesh.
on the flip side--- IF he's correct? well, my Mom and I are heading to our fave Mexican restaurant tmro and Margarita's here we come- we've missed you
~ hahaaaaand seems Mom can have her wine, the MO said "why not?"
(((((as far as Mom and diet/exercise? if ya can't beat em? join em???!!)))))
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Gail,
Now I understand why you would feel that way, I had forgotten you have been hit twice by this awful disease. I am sorry. I sit with a kind older man at rads in the morning. He finally spoke to me today, I brought him a cinnaman roll from the bakery, he has lymphoma. He said he had a swollen ankle that wouldnt go away. He just finished chemo and is now doing rads. I could tell he was a kind soul, he winked at me every morning but hadnt said a word. I brought goodies for the others I was bonding with and included him, I could see the tears in his eyes as I handed him the bag. It was so specail to me and I think to him also. I was going to look up lymphoma because I only know it has to do with the blood. Did you have to do some kind of treatment for it? Did it have anything to do with the BC or totally non related?
Gail your outlook is fantastic. I know if I was closer to you, you could help whip my butt into shape. Its inspirational. ((HUGS))
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Lemon - That's a great story about the older gentleman and the cinamon roll. I'm sure he appreciates your kindness more than you know.
Chasing - That's so interesting, wow! I've been trying to make some changes to my diet on my own and I'm set to see a nutritionist next week. I'll have to ask the same question you did.
IllinoisNancy - Congratulations and welcome
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Hello Ladies, I am 2yrs out from dx of ILC. I have been reading past posts, and remember how scary things were in the beginning. My local drs recommended a lumpectomy and rads, said we caught it early. I asked for an MRI, and was told it wasnt necessary. I went for a 2nd opinion. They did an MRI, and found a second tumor, and then during follow up ultrasound for biopsy of new spot, they found a third tumor. I had a mammogram two months prior to dx, and none of these showed up. I opted for a bilateral mastectomy, did chemo, and am taking tamoxifen. One thing I have found out about tamoxifen, is yes there are side effects, and yes there is a difference in how my body does on different brands of the generic tamoxifen. I would suggest reading about this on another topic. I know that the formulas for the tamoxifen have to be the same for the active ingredients, but the fillers and inactive ingredients vary. Everyone is different, so make sure if you are having trouble that you talk to your pharmacy about alternatives to try.
Diet< there are things that you can do to help, There is a wonderful website called "Forks over knives", we can help ourselves by eating less meat, cutting out /or back on sugar, No dairy if possible, and as many fresh fruits and vegtables as possible. For those of you in the early stages , the average weight gain on Tamoxifen is 25 lbs. be ready and head it off at the beginning, and you can manage. Low fat is good for lots of things, and a healthy weight is helpful because overweight causes your body to make more estrogen.
I think it is great that this website allows us to talk and share info and support. To all my fellow ILC warriors, Keep fighting and live every day to the fullest !
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WOW! Chasingdreams, what a bummer of a MO! ALL of my Docs agreed about healthy diet and exercise.
On the subject of low-fat you have to be really careful because when they take the fat out they add in sugar to make up for the lack of taste. Sugar is BAD for us. It is fuel for cancer. If you buy low-fat or fat-free read the label for all of the hidden sugar and think twice.
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rdrunner - i was only offended at the way canadagirl was treated. other than that we all have opinions and am good with that. have to believe it will get sorted out.
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Hi ladies!
I think there has been some research that suggests that excerise is good for BC survivors because it helps lower estrogen output and keeps our lovely love handles from generating estrogen. There is a good explanation on BC.org in the "understanding risk" section.
I know that sugar isn't great for you, but it as far as I have been able to find out, it does not cause cancer to grow. It can make us fat, and we need to keep the BMI in healthy ranges. There are some studies that are researching insulin and it's relation to cancer and if you are diabetic/prediabetic it could be more of a risk factor.
This is from the Mayo Clinic about the sugar/cancer myth:
Myth: People with cancer shouldn't eat sugar, since it can cause cancer to grow faster.
Fact: Sugar doesn't make cancer grow faster. All cells, including cancer cells, depend on blood sugar (glucose) for energy. But giving more sugar to cancer cells doesn't speed their growth. Likewise, depriving cancer cells of sugar doesn't slow their growth.
This misconception may be based in part on a misunderstanding of positron emission tomography (PET) scans, which use a small amount of radioactive tracer — typically a form of glucose. All tissues in your body absorb some of this tracer, but tissues that are using more energy — including cancer cells — absorb greater amounts. For this reason, some people have concluded that cancer cells grow faster on sugar. But this isn't true.
Anyway, I'll go with the Mayo Clinic and not feel bad about adding sugar to my coffee every morning.
Hope everyone has a great weekend! We might get some snow in Southeastern PA on Monday. Hoping for a good wallop since we haven't had any all winter and then we can bring the Spring on!!!
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AH!!!!! So i can not feel so bad about my glass of wine! lol.....thanks for sharing.
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Well, the jury is still out on the alcohol issue, but you shouldn't feel bad about a sugar-rimmed glass! I still like a glass here or there too and just try to limit it.
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Welcome Trail2 and thanks for sharing your story. Hi ladies, its pouring here in North Florida. I hope everyone is having a great weekend. Hugs
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